At the time of the PD diagnosis, the neurologist did a finger tapping test by tapping your thumb and several fingers together as fast as possible, also opening the fingers as wide as possible each time. Sensors on the fingers allow the movements to be measured accurately and objectively, and this still proves to be one of the most reliable measurements of Bradykinesia. However, he did it by eye and I adopted that method (against his wishes because of its unreliability..🤔) to check my PD situation myself. If it is fine, then there are hardly any hiccups when tapping 10x fast at the different fingers. Problems with the left little finger (tremor left dominant) indicates levodopa deficiency, the ring finger, middle finger and index finger the degree of urgency and amount. This measurement method helps me greatly in determining the timing and amount of C/L doses. My partner has to say, "Are you thinking about your medication?" less often, as she usually signals the non-motor symptoms first. I myself, by feel, am usually late. However, there still remains a discrepancy between signalling and swallowing....
For the first few years, I had a fixed intake pattern that was adjusted (increased) by the doctor. I changed that to a dynamic intake pattern myself due to my current very low medication needs. I have not seen my neurologist for a year involuntarily, and he is aware of this via one-way email communication. Timing and amounts of C/L change according to need. My first dose usual at 7.30am but after a good night's sleep and sufficient relaxation sometimes I take it as late as 10am or even at 2pm. It helps me strive to optimise C/L use, to avoid unnecessary medication and gain insight into the effect by noting the positive and negative influences.
So throughout the day, I am discreetly finger-tapping. I am curious to know if this method is also used by you and any experiences on the degree of reliability and objectivity. But also whether other easy (supplementary) checks are used.
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Will search. someone posted the to the website on HU about a month ago, unfortunately I only bookmarked the app directly. Yes, the app and the link don’t seem to be fully stable yet.
If you go back by one level on the website, you'll land on a page that gives some background and describes the projects that they are working on: roc-hci.com/current-project...
Thank you, but it is important to quickly get an idea of your PD situation at any time of the day and these methods are too cumbersome for that. Interesting if you want to do a DIY PD diagnosis. Finger tapping hardly takes time, you don't have to pick up a mobile phone and at least give me enough guidance for the current levodopa need.
'I start with the dominant left side and sometimes check the other side with ''bad'' response just to be sure.' Last year I also saw for a few months that the right had become the worse side. That is now left again.
Sorry I didn't understand well, what's the worst part about Parkinson's? So you do the test with the hand that belongs to the side most affected by the disease?
The app is certainly more accurate, but you do need a webcam. And processing time. If you work in the garden, are on the beach, sit in a restaurant, do a hike or just wake up, that is not very practical. But good to do every now and then. Still, I will have the same feeling as a check-up with the neurologist. He never asks me when I have taken my medication during an examination, while I think that is a huge difference for both motor and non-motor symptoms.
"My first dose usual at 7.30am but after a good night's sleep and sufficient relaxation sometimes I take it as late as 10am or even at 2pm." I do the same, I try to plan my day's pills depending on my activities during the day so as to try to maximise the impact of the C/L. For example I have an exercise class on Monday mornings so delay my first pill until 10am, an hour before the class. I also have to watch what and when I eat for this to work too. I expect I get away with this slightly random approach as I was only diagnosed last year and symptoms are mild although noticeable. Left side tremors. I have no idea if this is good or bad but atm I feel like I want to take the least amount of meds possible.
Seems a very good attitude. To try to take only the C/L medication that is really needed to function properly, but nothing extra just to be on the safe side. How do you control your levodopa needs? Purely by feel?
I still have to take sinemet every 4/5 hours but try to plan the time of the first dose each day depending on what I might be doing. It’s a bit of trial and error. I’m not too bad in the mornings so can delay my first pill. Not very scientific!
I don't think you can do it any more scientifically than by taking your medication only when you really need it. Not only less, but sometimes that can also mean something more or more often.
All this is great for the first 10 years or so of course 😂. After that, you're at the mercy of your doctor and on time every single dose every single day for your Sinemet.
Of course pdpatient even without PD, the difference will be great in 10 years. That does not change the fact that you will have to work hard on a PD inhibiting lifestyle NOW. This, in my opinion, includes dynamic dosing of medication. Even though the baseline need for levodopa will probably get much higher, never again will I let my absent uninterested neurologist determine a fixed schedule in full consciousness. After all, he ensured that his doomsday scenario became a reality within a year already, and his negligence has left me with another neuropathy. That I can enjoy my life again even with these double troubles is not to his credit. But rest assured, I also realize that with PD you don't have to worry about drudgery, every "summertime" will look different.
Hi, there's a simple app on playstore called 'click speed test', I use this to get an objective measurement by placing phone with thumb on the back and then tapping as fast as I can with fingers on the screen for 10 seconds. When I'm feeling good I can score 55 ISH with both hands. When feeling rough my right hand score drops to 40 ish
Thanks but I'm stuck at turtle, "Snap those fingers, You lazy ass" is not exactly motivating, but more importantly, it's not inconspicuous. You can do the manual finger tapping unnoticed, while eating, driving, or walking, without anyone asking what on earth you're doing!
The advanced sensors in the Apple Watch, like its accelerometer and other motion detectors, enable some apps to more objectively measure tells like hand tremors, slow walking pace, or rigidity.
I’m trying to find an affordable refurbished one, (series 6+ ?), but maybe you have recommendations for simple practical apps to use. The FDA has now cleared three such apps that allow users to easily track motor symptoms and medication responses right from their wrist:
* Parky
* StrivePD
* Neurorpm
Do you have any experience with this or are other apps available by now?
I couldn't find any other contributions about this on CP, but please let me know!
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